These anonymised examples highlight a diversity of diagnostic journeys.

Initial benign epilepsy diagnosis
A child was diagnosed with benign rolandic epilepsy in primary school. Over time, their speech slowed, learning became harder, and behaviour changed. What first seemed mild was later recognised as part of a broader sleep-activated epileptic encephalopathy, with ESES/CSWS identified on EEG.

Stroke, cerebral palsy, then DEE-SWAS
A child had a stroke in their early years. They were left with hemiplegia, cerebral palsy and epilepsy. Years later, subtle changes such as increased tiredness and changes in function led to an EEG and a diagnosis of DEE-SWAS.

Early brain injury and difficult decisions
A child had a brain injury around birth and developed epilepsy early. In the school years, they they developed ESES/CSWS with developmental regression. Despite multiple medications, development regressed and surgery was discussed as a possible next step.

Normal development, then sharp decline
A child developed typically until around age 6. Seizures began, followed by noticeable changes in thinking and learning. Later testing showed a significant drop in ability, leading to a diagnosis of EE-SWAS.

School first notices change
A child was developing typically until around age 6. Their teacher first noticed a shift in behaviour including withdrawal and rigid behaviour. A tonic seizure led to a nocturnal epilepsy diagnosis. Behaviour and learning then declined dramatically. There were more clinical seizures and further testing led to a EE-SWAS diagnosis. A few years on, the child has autism, ADHD and dyspraxia diagnoses and attends an autism school. As both siblings also have autism, with more pronounced difficulties emerging at a similar age, the family has questioned how much of the child's developmental change reflects the effects of epileptic activity, an underlying neurodevelopmental or genetic cause, or an interaction between the two.

Early epilepsy, then a second wave
A child had seizures in infancy and later improved. At age 4, they were diagnosed with global developmental delay. In their first year of school, new clinical and subclinical seizures emerged alongside further developmental regression. They were then diagnosed with DEE-SWAS.

Genetic condition alongside DEE-SWAS
A young child with a known genetic condition developed DEE-SWAS with very high spike-wave activity. Multiple medications were tried to try to reduce it.

Loss of language and emotional control
A child gradually lost speech and the ability to understand and process language. Daily meltdowns and distress followed. After a long search for answers, an EEG showed marked epileptic activity during sleep and the child was diagnosed with Landau-Kleffner syndrome (LKS).

Ups and downs over time
A child does not follow a steady decline. Instead, they move through good phases and bad phases over weeks or months. Speech, behaviour and learning go up and down alongside changes in sleep-activated epileptic activity. Their diagnosis sits within the DEE-SWAS/EE-SWAS spectrum.

Improvement in the teen years
A child lost speech and learning skills during childhood alongside CSWS/ESES. In the teen years, the sleep-activated epileptic activity improved. They regained skills and independence but now have a permanent diagnosis of autism level 2 and mild intellectual disability.

Illness-triggered epilepsy and developmental change
A child was developing typically until early childhood, when a serious illness led to epilepsy. By around age 7, she showed intellectual delay, impulsivity and reduced emotional regulation. Further investigation identified ESES and she was diagnosed with a developmental and epileptic encephalopathy. There is a family history of epilepsy.

Medication-related onset or worsening
A child was diagnosed with epilepsy in early childhood and started on medication. After this, seizures, sleep and behaviour worsened. EEG showed near-continuous epileptic activity during sleep, described as ESES. Medication was suspected to have contributed to the worsening, and treatment was changed.

Structural cause and ongoing high EEG activity
A child with a brain malformation developed ESES with very high sleep activity that persisted over years. Multiple medicines and surgery were tried with limited effect. The focus shifted from resolution to long-term management and quality of life.

Return or persistence in adulthood
A child experienced ESES/CSWS in early childhood that appeared to settle, then saw a return of significant symptoms in early adulthood. Ongoing sleep-related epileptic activity and cognitive changes continued. Transition to adult care was difficult, with limited specialist knowledge available.

Immune-related pathway and partial response
A child with long-standing ESES showed a temporary response to steroids. Further testing suggested brain inflammation. An immune-based treatment reduced EEG activity for the first time, but required careful adjustment because of medication side effects and ongoing uncertainty.

Stories reflect a range of diagnoses or diagnostic terms, including DEE-SWAS, EE-SWAS, Landau-Kleffner syndrome (LKS), Continuous Spike-Wave in Sleep (CSWS) and Electrical Status Epilepticus in Sleep (ESES).

It takes two people

A child needs two adults to manage when they are distressed and having aggressive and unsafe behaviours. The child now barely speaks, so the parents don’t know how they feel and what they need. Nothing seems to help. One parent cannot do it alone. One parent stops working. A sibling spends more time away from home. The family feels the strain and the guilt. There is little practical support. Services respond as if this is the first family they have seen like this.

Siblings miss out

Siblings are no longer able to do the activities they once did or have friends over as often. The child with complex epilepsy is constantly exhausted, has clinical seizures each day along with repetitive and unsafe behaviours. The needs of the child are beginning to shape family life.

Needed support is not available

Care needs are high. What would help most is practical support at home, like cleaning, food preparation, and daily tasks. But the child is not recognised as having a disability with disability funding , so the family cannot access supports. Even when funding is available, it may not cover what helps most.

More than one child affected

Two children in one family have this epilepsy syndrome and the GRIN2A mutation, with different levels of impact. Both have learning and behavioural challenges that are not managed with strategies for autism or ADHD that have been recommended by the psychologist. Appointments, work, and daily life become difficult to manage under constant pressure.

Strain leads to separation

Care is constant. Sleep is minimal. The pressure leads to divorce. To cope, the children are split between households. Care responsibilities continue in both homes, with little opportunity for rest. The child with ESES and their siblings lose the experience of being together as a family. Each parent continues to carry significant care, often without a break.

Extended family cannot accept it

Grandparents cannot acknowledge what is happening to the child. They only way for the child’s parents to avoid conflict and keep these relationships is to not discuss CSWS, smile and act like everything is fine. A difficult decision is made that the child cannot be left in their care, due to fears seizures may be dismissed as tiredness or bad behaviour.

Needs double

A family is already supporting a child with autism and ADHD when another child is diagnosed with EE-SWAS. They are now juggling two different sets of needs, with the stress of challenges each child faces affecting the other. The third child also shows signs of autism.

History cannot be spoken about

A child’s deceased relative had seizures and was on epilepsy medicines for decades. But epilepsy stigma from the past means important family history has been lost and is therefore unavailable to support the child’s care.

Life is a rollercoaster

Things improve, and it feels like progress. The family imagine life could return to normal. Then everything shifts again as nightly seizure activity ramps up unexpectedly. Being out in the community become a trigger. The child is dysregulated, runs off, lashes out. A few weeks earlier, there were no issues. The parent is left wondering what changed. Was there something they could have done differently?

Family meals no longer fun

A child who used to eat all foods with gusto will now only eat one food for weeks then that food abruptly changes to another food. The parents are trying to give the child a healthy, balanced diet but meltdowns ensue if the preferred food is not available and can go for hours until they go and purchase the food. Once the food is eaten the child can move on immediately.

Can’t afford to stay near support

Care needs increase and parents can no longer work at the same level. Income drops. The family struggles to afford living close to the best available medical, disability, and education supports. They are stuck in indecision, hoping things will improve. This goes on for years. There is little guidance to help them make good decisions. They are chronically tired and unable to think clearly. Long-term financial security for them and their disabled child is under threat.

It is not a parenting problem

Professionals and friends observe the child and freely give advice about behaviour and parenting approaches. But the child’s nervous system is overwhelmed. Everything feels like a threat. The parents have tried it all and know there is very little they can do. The focus becomes safety and preventing harm above all else. Parents are exhausted and completely responsive to the child’s needs. Advice like “just try this” feels out of touch with what is happening. They learn it’s best not to talk about it.

Siblings need to be protected

A child can wake up aggressive, with behaviours that are unpredictable and intense. Parents focus on keeping everyone safe.
Parents are also left trying to explain the violence to other children, in ways that feel fair, safe, and age appropriate. The behaviour is medical, not intentional. But the impact on the whole family is traumatising.

Holding on

Parents find it hard to accept that the child they knew is now a different child, still loved, but with an evolving identity and higher care needs. No one can say whether the child from before will return, or if this is the new normal. So they hold on to the small things that feel familiar, reminding themselves and their child of who they were and what they could do as if it is present tense.

Desire doesn’t match capacity

A child with EE-SWAS has a strong desire to spend time with a friend and looks forward to a planned playdate. When the friend arrives, playing together is harder than expected. The pace of play, the noise, and the back-and-forth of deciding what to do can feel overwhelming. Over time, the friend gravitates towards the child’s siblings, where play flows more easily. The child ends up playing alone. They are left feeling sad and confused, unsure why something they wanted so much didn’t work out as hoped.

A day out is no longer simple

A child with ESES goes to a busy trampoline park for a party soon after diagnosis. Their parent stays close, constantly urging them to slow down and not run into anyone. The parent does not have access to any information about what can worsen symptoms and is worried a head knock, which can happen here, could be more dangerous for their child. The child feels restricted and a cloud hangs over the outing.

Inescapable appointments

At medical appointments, a child with CSWS hides under a chair, screams, and repeatedly tries to run out of the clinic while their parent talks. The parent is overwhelmed managing the child and cannot remember the important questions they have been waiting months to ask. The child hears conversations about themselves they may not understand or do not want to hear. There is no easy way to meet everyone’s needs.

Barriers to belonging

A child is unable to complete a religious sacrament that their siblings participated in, after the place of worship declines to make adjustments for their needs. The school connected to the place of worship does not intervene, due to policy constraints. The family begins searching for another place of worship that is willing to support their child. In doing so, they feel pressure to commit to impossible attendance levels in order to access that support. The relationship between the family and their original place of worship and school, once trusted institutions, is fractured.

Judgement in public

A parent takes their four children to the beach, something the family has always loved. Their child with EE-SWAS still enjoys the beach but now often screams and throws sand. A nearby adult loudly criticises the parent in front of other beachgoers for not disciplining the child. The family leaves early, the parent in tears. The siblings don’t understand why they have to leave and get upset.

Activity now feels risky

A child who loves diving underwater continues to do it in the family pool after the CSWS diagnosis. But their parents worry about seizures and drowning. A family member notices the child is having subtle absence seizures in the pool and from then on the pool is discouraged due to fears of drowning. Something that was a fun outlet now feels unsafe.

Falling between systems

A family looks for activities to keep their child connected to the community. Mainstream sport, which they actively participated in before ESES, are now too hard and overwhelming. They are unsure if their child is disabled enough for disability group sports? They have been told by the NDIS that ESES is a medical condition and not a disability so they are locked out of funded programs that could work for their child. There is no sporting community for the child - and their family - to belong.

Life becomes smaller

A child becomes less able to leave the house due to sensory overwhelm in public environments. The family adapts, with the parents taking turns to sytay home with the child while the other parent and siblings go out. Over time, it becomes normalised to do things separately.

Self-conscious

A child who is in recovery from EE-SWAS still sees friends from their mainstream school after they are moved to a specialist setting. The peers are warm and happy to see them, and often say hello. But the child carries a strong awareness of what those peers have seen during earlier periods of regression, dysregulation and difficulty learning. When they see them now, they can become quiet or withdrawn, unsure how they are being perceived.

Friendships fade

Friends of the family struggle to understand why they cannot go out for dinners and other social engagements without the children, especially when seizures are not obvious. They don’t understand that the family are in deep crisis. The friendship ends as expectations are not met.

The impact of unpredictability

Plans are often cancelled at the last minute, depending on how the child is doing. Over time, this becomes harder for others to accommodate. Relationships begin to drift. The family is isolated, apart from those few friends and family who understand.

Others notice the change

Long-time friends visit and see how much the child has changed. The child becomes overwhelmed and cannot cope with play that was once fun and easy for them. The parents have to ask the visitors to leave early.

Something the child loved no longer works

A child who was once a strong netball player remains in their team as their EE-SWAS evolves. At training, they repeatedly run off the court or lie down on the court. During games, they wander and scream, unable to follow the game anymore. The coach is kind and keeps including them, but the child is no longer really part of the game and doesn’t want to be there. It is highly emotional for the parents to watch the change. They begin to question whether staying is good for anyone. Eventually, they leave the team.

Loved school, then couldn’t stay

A child who loved school, especially their close friendships, was now completely overwhelmed by schoolyard noise and crowding. The school reduced demands, offering breaks and creating quieter spaces. Despite this, the child continued to leave the classroom abruptly and spent much time wandering in the playground or colouring with a teacher’s aide. Over time, their day has been reduced to a few hours.

Reading disappears despite support

A child who had started reading lost the ability to recognise words. The school introduced targeted support and adjusted expectations. Despite this, reading did not return, and the child became increasingly aware of the gap when their younger sibling started school and quickly overtook them.

Falls asleep in class

A child developed ESES and was extremely fatigued and struggled to stay awake in class. The school allowed rest breaks in sick bay and adjusted the day where possible. Even with these supports, the child missed large portions of learning.

Childcare falls away

A family needs to return to work but can no longer find anyone who can care for their child. Behaviours are intense and unpredictable. Nannies, babysitters and informal supports step away. The child now requires constant supervision from a parent. The family is left without childcare and unsure how they can return to work to cover living costs.

Behaviour escalates despite strategies

A child began showing distress, including screaming, lashing out at peers physically and shutdown in class. The school implemented behaviour plans and sensory supports. At times these helped, but when spike and wave activity was high and medication changes were occurring, behaviour remained difficult to manage in the classroom. Other parents complained.

Loses speech in a supported environment

A child with cerebral palsy who had been communicating well began to lose words and understanding. Teachers adapted communication, using visuals and simplified language. Despite this, the child became quieter, less engaged and less able to participate over time.

A pathway with progress
A child was diagnosed with EE-SWAS in primary school, with a high spike-wave index and significant impact on learning. Over time, with treatment and support, things began to improve. Now in early adolescence, he is keeping up with his peers academically. He no longer requires an individual learning plan and has recently been recognised for his academic progress.

Seizures disrupt the school day

A child experienced absence seizures and periods of confusion during school hours. Staff monitored safety and adjusted expectations. Learning was frequently interrupted, and it became difficult to maintain continuity. Staff didn’t feel confident to manage this safely.

Kindy derailed

A child who had thrived at day care was diagnosed just before starting school. They experienced sensory overwhelm, lost speech and became aggressive when distressed. The family was closely connected to the school community, with three older children already there. The school tried to support the child, but the child’s needs were hard to meet without clear strategies. The family felt increasingly overwhelmed and began to withdraw from the community and friendships.

Absconding due to sensory overwhelm and anxiety

A child began leaving the classroom when overwhelmed. They could not tolerate noise blockers. The school increased supervision with a 1:1 teacher’s aide and gave access to a quiet room with LEGO and colouring. Despite this, the child continued to abscond at times, and the focus shifted away from learning, toward keeping them safe.

Sensory needs become unsafe

A child who had been managing in the classroom began to seek sensory input by chewing on objects. The school introduced chew toys and other supports, which helped at times. However, the child continued to chew on unsafe items, including things picked up from the floor or bin. Keeping the child safe while supporting learning became difficult, and the parents were extremely anxious the child would choke.

Early pick-ups and family impact

A child experienced increasing anxiety and dysregulation at school. Even with support, the parent was often called to collect them partway through the day. Over time, this became routine. The parent eventually lost their job and faced ongoing difficulty finding work that could accommodate this level of unpredictability, alongside growing stress and impact on their mental health.

Partnership breaks down

A child’s needs became more complex and harder to interpret over time. The school and family were both trying to help, but the family heard a rumour that their child’s teacher was saying this was a poor parenting problem and the family is “difficult”. The parent had created resources and tried to explain CSWS, but without visible seizures as proof of epilepsy they were not being understood. They became increasingly distressed, helpless and alone, and the partnership with the school began to break down.

Strong knowledge, limited output

A child showed clear understanding in conversation but struggled to process instructions and complete work. Teachers provided support and extra time. Even so, the child could not consistently demonstrate their knowledge.

Skills come and go

A child’s abilities fluctuated over time. The school adjusted learning plans and monitored progress. Despite this, skills could be lost and regained unpredictably, making consistent progress difficult.

Writing becomes a barrier

A child developed increasing difficulty with writing. The school introduced alternative ways to complete tasks, including technology. Writing remained a significant barrier to showing learning.

Friendships begin to fall away

A child who had close friends found it harder to keep up socially as EE-SWAS progressed. Eventually they appeared to not understand how to play in addition to some changes in their mobility. A teacher’s aide was assigned in the playground to support participation. The child would stand by the teacher’s aide for comfort watching the other children play on each break.

Moves away from siblings’ school

A school encouraged a family to move their child to a different school to better support their needs. The decision was made with care and input from both family and school. It created separation from siblings and familiar routines, which was very emotional for the child and their siblings.

Processing speed mistaken for ability

A child in a support unit had structured support and experienced staff. As their needs changed, adjustments were made where possible. Their very slow processing speed was often mistaken by different support staff as low interest or intellectual disability. This led to reduced expectations and fewer learning opportunities, with the child spending long periods on an iPad rather than being supported to engage with learning.

Behaviour pathway, limited fit

A child with an intellectual disability who had thrived in mainstream prior to CSWS was moved to a behaviour-focused school after increasing aggression, distress and absconding. While the environment provided structure and safety, the high levels of dysregulation of peers in the classroom were difficult for the child to process. This led to increased agitation and confusion. They became increasingly unwilling to attend, and access to education declined.

Autism support no longer enough

A child with a level 2 autism diagnosis had established supports that had worked well. As their needs changed, staff adjusted autism related strategies and increased support. Even with these efforts, the child’s ability to access learning declined. The supports in place were no longer enough matching the child’s evolving cognitive and communication needs. What was missing was guidance on how to support fluctuating and regressing skills linked to ongoing epileptic activity.

ADHD strategies fall short

A child who also had an ADHD diagnosis received structured support for attention and behaviour. As memory and processing declined due to ESES, these supports were less effective. Learning became increasingly difficult despite ongoing effort.

Attendance becomes the goal

A child’s attendance became inconsistent due to fatigue, seizures and distress. The school worked with the family to support attendance where possible. Over time, simply getting through part of the day became the focus.

Home learning for flexibility

A child moved to home-based learning after school became too overwhelming. This allowed flexible pacing and reduced distress. It also placed significant responsibility on the family to manage education.

Parent navigating ongoing change

A parent worked closely with the school as their child’s needs changed over time. Adjustments were made and reviewed regularly. Despite this, the lack of clear guidance and the unpredictable nature of the condition created ongoing stress and uncertainty.

Therapy adds strain

A school understood a child’s presentation as anxiety and medical system related trauma and insists on psychology sessions. The child could not tolerate sitting in therapy or communicate with the therapist. Sessions were often cancelled, with ongoing financial cost to the family. When sessions did go ahead, the disruption to routine made it difficult for the child to return to school. The approach did not improve access and instead added strain to both the child and family.

Diagnosis required for support

A child in a private school was no longer able to manage full days and required a more supported setting. Access to a support unit in the public system depended on an autism diagnosis. Two assessors reviewed the child and did not provide a diagnosis, noting that the condition may not be lifelong and that recovery was possible. Despite having similar functional needs to children in high-support autism settings, the child remained in an environment that could not meet their needs. They attended reduced hours for over a year while the family sought further assessment. A third assessment was eventually successful, but the process placed significant financial, emotional and practical pressure on the family.

Coming soon - please share your stories. Email melanie@voicesofdeeswas.org

Coming soon - please email your health, education and disability system challenges - melanie@voicesofdeeswas.org

It’s still part of his story

A young adult, 32, was diagnosed in early childhood, with significant impacts on communication and learning. In adolescence, his condition improved, and he now lives independently. Some differences remain, including ongoing challenges with auditory processing. He identifies as neurodivergent. He is aware that others he meets now may not know this part of his history, but it continues to shape how he understands himself. He describes that time as something that was very hard to go through.

A full life, with differences

An adult was diagnosed with this rare epilepsy syndrome in early childhood, with seizures beginning the year before diagnosis. The seizures resolved during adolescence. For many years, he understood his experience mainly through the seizures. It was only later that he began to recognise how ongoing differences in language comprehension, self-expression and social confidence may be connected to the condition. These challenges can be frustrating, but they have not prevented him from building a full adult life. He has worked in a professional job, married and ha a child.

DEE-SWAS in older age?

Some neurologists have suggested that EEG patterns like those found with DEE-SWAS may be identified in adults more often than previously recognised. In some cases, this may reflect persistence over time, while in others it may be that sleep EEG was not performed in childhood, meaning the pattern was never identified.

“To better understand the progression of this electrographic pattern, longitudinal studies of children with known ESES with repeat EEG studies into their early and late adulthood would be helpful in the future.” Electrical Status Epilepticus in Sleep (ESES) in an Elderly Adult: A Case Report

Two generations with similar developmental histories

A six-year-old child was diagnosed with ESES. Learning about the condition prompted the family to reconsider the childhood history of the child’s father, who had experienced substantial developmental and learning difficulties that later improved, and his sister, who had significant early language delay. The family began to question whether apparently different developmental histories across generations might have shared an underlying neurological explanation.

Travelling for better care

A family switches from local care to a specialist service several hours away. The travel is longer and more complex, but care is better coordinated, plans are clearer, and communication is easier. The distance is greater, but the overall load can be less.

Everything takes longer

A family travels interstate for a multi-day hospital stay. Getting there, finding somewhere to stay, packing medications and supplies, and managing everyday life around the visit can take more time and effort than the appointment itself.

Care split across hospitals

A child’s care is shared between a local hospital and a specialist centre several hours away. During periods of instability, travel becomes frequent and intense. The family relies on relatives and friends to help keep everyday life going.

Siblings stay behind

One parent travels with the child for specialist care while the other stays home with siblings. Family life becomes split across locations, and time together as a whole family becomes harder to protect.

Making distance manageable

A family groups appointments into a single trip, stays overnight and sees several specialists at once. They develop routines around packing, food, entertainment and unexpected admissions. Over time, travelling for healthcare becomes another part of managing the condition.

Not eligible for help

A family is struggling with hospital and medical costs but is told their income is too high to qualify for support. On paper, they appear to be managing. In reality, much of that income is already absorbed by care.

Changing how the family lives

A significant portion of household income goes towards medical care. Budgets are reworked, other expenses are reduced, and some supports are delayed because everything cannot be paid for at once.

Managing care means managing costs

Appointments, treatments and therapies are planned around what the family can afford. Payment plans are arranged where possible, and decisions about care are shaped partly by cost.

Debt becomes part of care

Medical expenses accumulate over time. Families use loans, credit or long-term payment plans to keep care going. Financial debt becomes another consequence of the condition.

Support depends on where you live

Families search for grants, subsidies and funding programs, but eligibility and availability vary widely. Two families with similar needs may receive very different levels of support depending on location, systems and eligibility rules.